Replies to This Discussion

Permalink Reply by Classical Anne in NC mountains on March 14, 2015 at 6:03pm

Greetings from North Carolina, U.S.!  Yes, I had rosacea diagnosed at the same visit that diagnosed the FFA.  Although I do not have a lot of trouble with redness or acne-like bumps, they do appear whenever they're least welcome.  But what bothers me most often is simply the roughness of my once smooth skin.  I'm sure it's not nearly as apparent to others as to myself, but it does make me sad.  I have heard many ladies on this site complain of rosacea as well.  As you said, it's just another facet of this life-changing disease.  That said, my path with the hair loss has not been as difficult of late as it was in the acceptance phase.  And my FFA seems to be progressing slower than many others, which I attribute to the superficial steroid injections.  I take no other prescriptions for FFA.

Good to hear from you, and hope your journey eases,

Anne

Permalink Reply by Nancy79 on March 14, 2015 at 6:48pm

Hi from Kansas City,

I have not had any skin changes but I have been told I have rosacea decades before the FFA. My derm wants me to take Kenelog intralesional shots. Have you had any bad side effects from these shots? I have read about  bumps the size of fly bites that never go away. I have also read the skin of the bumps becomes very rough and scaly. How long have you been taking the shots and how frequently are they given?

Any information you could provide would be greatly appreciated. I have to make a decision soon.

Thank you, Nancy

 

Permalink Reply by Classical Anne in NC mountains on March 15, 2015 at 6:50pm

Hi Nancy, I think I wasn't very clear on my response above.  The injections I'm receiving are a minimal non-systemic steroid in several areas of my scalp, not my facial skin.  Is Kenelog suggested for your scalp, or for your face?  There are 2 side effects of my scalp injections that I've experienced, but I consider them quite minor, as opposed to losing my hair faster.  You may have heard about the steroid injections causing "dents" in your forehead.  I now have two very slim and shallow grooves, from my hairline and extending about 3/4 inch toward the center of my forehead.  I have also experienced some fine, pale blue vein lines on the outer sides of my forehead.  In writing, this may all sound freakish.  But I assure you, even without wearing bangs, these effects are barely visible.  And most of us do end up wearing bangs [British: fringe] to help disguise the hair loss anyway.

So if it's scalp injections you're inquiring about, I'm all for them.  I generally get about 15 tiny injections each visit, and those appointments are 6 weeks to 2 months apart.  I have never heard of the effects you described, and wondered if you were referring to facial rosacea or scalp hair loss.  My experience with the rosacea has been mild to moderate.  Large patches of my face turn brilliant pink/red in excessive heat, in wind, in cold, and in exertion.  But those circumstances are the exception, not the norm.  Most days there's no visible effect of rosacea.  But what I do feel is like minimal 'lumpiness' [for lack of a better term] on my chin and forehead. Just not smooth skin.  Only occasionally am I gifted with a little red headlight here or there.  Oddly enough, those spots are completely painless and inevitably disappear on their own within 24 hours or less.  And whether or not my full face is reddish, some days it feels like a mild sunburn on my cheeks.  Not enough for me to seek any medical treatment or prescriptions.  I have way too many for other medical issues as it is.

Nancy, if I have just totally confused you, please let me know.  I'd like to help you with your questions and decision if I can.

Best wishes,

Anne

Permalink Reply by Nancy79 on March 15, 2015 at 8:17pm

Hi Anne,

The scalp shots are triamcinolone acetonide or brand name kenalog.  Its the corticosteroid injection I see sited in the scientific literature. Do they say why the groove comes down the forehead? I am glad yours are minor but I have read of people being left disfigured. I have also read about the blue veins and one person said she was left with a large blue vein coming down vertically the full height of her forehead. I guess the steroid thins the skin and makes veins more visible. Who knows. What bothers me is that my doctor did not disclose any of these possible side effects. When I inquired about it she said "Who cares, you are going to be bald soon. Would you rather look like that?"

Yes, I have looked for another doctor but there is no choice here in KC. I have had worse encounters with two other derms. I finally agreed to a biopsy a couple months ago and it is confirmed I have FFA that is still active. My hair loss is slow I think because I researched it at Kansas University and came up with my own treatment. I am on Avodart (dutasteride) 0.5 mg daily and a narrow band UVB light brush that takes away the itching and redness. My family practitioner wrote the orders after I showed her the research studies. I picked these treatments because they had higher success rates than other treatments and little to no side effects.

None the less, after a year of treatment it still is active (I have hyperkeratosis of the follicles) The next line of successful treatment cited in the literature are these steroid shots. You said they slowed your loss. How fast was it going before you started the injections. My doctor wants to give me ten shots monthly which is more frequent than I have seen in the literature. Do they give you any strategies to minimize the side effects you have encountered? How many rounds of shots have you had?

It is so nice to talk to someone who is taking these shots. It balances out other things I have read. My doc is certainly no fountain of information. I had to go back to the literature to see how often these shots are effective. They appear to be the next best treatment to try. I have just been afraid of the side effects.

Thank you so much for your reply and answers to the questions above.  Nancy  

Permalink Reply by Classical Anne in NC mountains on March 16, 2015 at 2:40pm

Nancy, so good to hear back from you and to know just how proactive you have been with your treatment.  Regardless of the proficiency of our doctors, it is up to us to remain informed in our options.  I am fortunate that my Derm is very open, in terms of treatment, and often asks me what the latest word is from this forum of intelligent and compassionate ladies.  On the other hand, though she has a thriving practice in a fairly large city, I am the first and only one she has treated for FFA!  I went to her with bumpy, scaly, itchy, red hairline and total eyebrow loss.  She was stumped, suggested a biopsy, and was fascinated with the result.  She immediately did some research, and on my next visit offered several treatment options.  Because of my rather complex chronic medical history, and overload of maintenance prescriptions, the choice was simple for me and I opted for the injections.  [Oddly enough, though I have been industriously proactive in my healthcare for nearly 20 years, I never asked specifically what the steroid injections were -- just relieved to know they were non-systemic.  Thank you for putting a name to them.] And by the way, my Derm did not mention the possibility of visible blue veins or dents, either.  But I think she understood that I had already begun research on my own, and she offers every opportunity for me to ask questions.  My only real concern was that nothing we might try would interfere or impact any of my other issues. 

So now I have been receiving the series of injections every 2 months, on average, since the summer of 2013, probably totaling a couple hundred injections.  Rarely, one of the injections will sting and hurt a bit for an hour or so.  But I'd say 98% of them feel no stronger than just touching your scalp with a toothpick  As for the side effects, your theory of thinning forehead skin may very well explain the appearance of the thin blue veins.  But they are easily masked with a dusting of face powder, though I rarely even do that because my hairstyle [if in fact it's actually a 'style', which I highly doubt at this point] covers them.  The dents are more central, so I see them every day under cosmetic lighting in my bathroom.  But I had to ask my sweet husband to look closely for them before he ever noticed them in natural light.  I can't imagine that anyone else I come in contact with has noticed them.  And as for concealing them, I hold out two hopes.  I have begun applying a very small dose of generic Retin-A, which my Derm is happy to provide in free samples.  Beyond that, it is our understanding that they may simply disappear on their own after I stop the injection treatment.  In any case, I consider both these side effects minimal, and a reasonable risk for the peace of mind of such a minimally invasive treatment.

Nancy, you strike me as a very thoughtful person.  So I hope you won't mind me sharing my thoughts on this whole issue of side effects.  I am definitely skeptical of the disfiguring nightmares you have read about, unless they were cited with medical evidence on a professional website.  In my opinion, horror stories are the exception, and frequently from unreliable sources.  To begin with, more people register complaints than praise online -- they do not represent the majority.  In addition, too many of those people are over-dramatic whiners!  [I'm sorry, but I have little patience with them.]  I have read comments to the effect that "alopecia has ruined my life" some even say "my life is over" !!  I'm afraid those same people would see little "dents" like mine as disfiguring gashes. 

But I do not mean to belittle the initial emotional turmoil that a diagnosis of FFA inevitably brings.  It does feel like your life has changed, and it's true it will never be the same.  Because, as you know, the process of losing hair cannot [at this time in medical history] be stopped, let alone reversed.  It's trite and demeaning to say "it's not the end of the world".  But I do believe some people are simply lacking in perspective.  And, thankfully, I think the depressing feeling of loss diminishes considerably over time.  I won't say I was obsessed to begin with, but I did spend too many hours every day on the internet, and way too much pocket money on pretty scarves and headbands.  But that was my way of coping with the diagnosis, without knowing how far or how fast my own case would progress.  No one knows when the process will 'burn out' -- but medical consensus is that it does, eventually.  Sometimes I feel like my pattern of loss is noticeably more or less than before.  But the next shampoo, my impression is often reversed.  Back and forth.

For me, the tide has never ebbed quickly.  Possibly because we caught it and started treatment early.  Most people seem to have at least partially lost their eyebrows several years before the FFA diagnosis.  In most cases, the hairline has not dramatically receded 'til later.  Personally, I had been on mega doses of biotin a couple years, because of general thinning elsewhere, due in part to several of the long term prescriptions I had been on.  So I thought the little red bumps and itching on my forehead was the welcome stubble of new hair growth.  It never occurred to me that it was the opposite, that my hairline was receding.  But my Internal Physician was a bit more concerned with the persistent "rash", and flummoxed at the total loss of eyebrows.  She's the one who sent me to the Derm in the first place, which allowed me to diagnose and begin treatment quickly. 

So I am not saying that the kenelog injections slowed my loss.  What I meant to say is that my loss doesn't seem to have progressed as quickly as others have described on this site.  I feel like I'm losing hair more slowly than many of the ladies.  Whether I ever catch up and lose the same amount in the long run remains to be seen.  Maybe the steady continuation of injections will mean I meet my burn-out stage more slowly, or maybe it will mean my total loss is less severe than others.  One can only hope. 

My condition is still active, but tolerably so.  I'm continuing the treatment indefinitely, but reassess at each visit to my Derm.  Your suggested 10 shots monthly is not really far off my own schedule, at 15 or more every 6 weeks to 2 months.  You might want to leave a little more time after the first round, just to gauge your reaction.  But if your MD is convenient, monthly visits may be just fine.  Unfortunately, my MD is an hour's drive away, and my husband has to take time off to drive me.  Otherwise, I believe I'd prefer monthly, myself.

I hope I have answered your questions, but please don't hesitate to ask more.  We learn by sharing -- that's the beauty of this forum!

Best wishes,

Anne

Permalink Reply by Nancy79 on March 16, 2015 at 5:26pm

Hi Anne,

Thank you for all of your information which really helps put things in perspective. I am seeing my internist next week for an annual check up. I will discuss the shots with her as well. I have had new hair grow in from the Avodart but it is sparse and  thin and does not make a significant impact. My derm told me Rogaine on it would help thicken it up so I am trying that.

I changed my diet to help this condition. I stopped eating foods that promote DHT production which kills hair follicles (four legged animal fat, palm and coconut oil).  I started back on coconut oil and I think I saw an increase in hair loss activity so I stopped it again. Avocados may prevent DHT so I try to eat a little avocado every day.  I am on an anti-inflammatory diet which involves eating more alkaline foods. If nothing else, it is a much more healthy way of eating than I hand done in the past.

I am doing everything to reduce inflammation in the hopes it will advance slowly until my burn out occurs. Oddly I think I have already had one burn out. The main spot of hair loss in the middle of the forehead has been there since 1998 (Premenopausal). I attributed it to perming my hair. Then in 2013 I began to have a 1/2" strip that was going from the middle of the forehead to the right side of the forehead. I have been looking into treatments since 2014.

You certainly have not had much side effects for so many injections over a two year period. This makes me feel much more comfortable trying the injections myself. I want to thank you very much for your information. I will be in touch if I come across anything else that seems to have a positive effect in arresting this condition.

Nancy

  

Permalink Reply by Classical Anne in NC mountains on April 4, 2015 at 2:56pm

NANCY, when I went for my latest round of Kenalog injections, I asked my Derm again about the dent and thin blue visible veins.  She confirmed her opinion that both will moderate, if not totally disappear, whenever I stop treatment.  She did say that the dose needs to be low, though I can't remember the exact terms -- basically a dose of 5 does the job with fewer side effects, a dose of 7.5 almost certainly causes dents.  I reminded her that I have found a form of Retin-A cream does smooth the dent area nicely as well.  I no longer have enough bangs to cover my forehead, even with the dreaded "comb-over" from back on the crown.  There's still hair, but just so thin that my scalp shows all over the top in the slightest breeze.  Anyway, I'm happy with my wig for outings [I no longer work], but around home I still prefer a soft head band, scarf, etc.  Just wanted to check in on you and ask if you have begun the injections, and at what dosage?  Best wishes,  Anne

Permalink Reply by Nancy79 on April 11, 2015 at 9:39am

Hi Anne,

Thank you for the information. I am still on the fence. I postponed my appointment to May. I am hoping I will have a good enough response from the Doxycycline that it won't be an issue. If I do allow the shots I will be sure to request the lower dose. This is valuable information. Thank you so much.

Nancy

Permalink Reply by Classical Anne in NC mountains on April 11, 2015 at 7:37pm

You are welcome, and good luck!  Let me know how things go.

Anne

Permalink Reply by Leigh on May 31, 2017 at 7:49am

Hello Anne -  I hope you're well!  I'm new to this forum and have been reading your posts here with great interest as they're very detailed and informative.  I was very recently diagnosed with FFA.  As I'm wary of any systemic treatments, my dermatologist has recommended the intralesional steroid injections.  Since your posts here were from 2015, and it appears you chose the non systemic treatment route as well, I wondered how the steroid injections worked out for you.  Are you still doing them and have they significantly slowed your hair loss?  Would you still recommend them? Any information you can share with me would be greatly appreciated!   Thank you very much in advance.  Best regards, Leigh

Permalink Reply by Classical Anne in NC mountains on June 1, 2017 at 10:33am

Hi, Leigh -- I no longer check this site often, but just happened to look today and found your post. Yes, it has been 4 years now [can hardly believe it!] and I have continued with the steroid injections, about every 2 months now.  In fact, had my latest round just 2 days ago.  

Because we have no way of knowing how quickly the hair loss would progress if we did not make use of any treatments or medications, it's hard to say how much the injections have slowed my loss.  Compared to what?  We caught my FFA very early [thanks to other dermatological issues], before I was even aware of the loss.  But from posted photos and comments of others on this forum, I do feel that I am not losing hair quite as rapidly as others.  My dermatologist is satisfied that we are keeping the loss at a comparative minimum.  But there's no doubt that I am still losing it in a slow but steady ebbing of the tide.  I'm having to be more creative with styling my hair, though I almost always resort to a scarf or hat, if not a wig, in public.

The side effects of the injections have not changed at all.  There are no additional thin blue veins or shallow 'dents' appearing.  All appeared with the first couple rounds of injections and have not increased since then.

So, yes, I do still recommend the injections -- particularly if you have reasons [as I do] to avoid adding systemic oral prescriptions to your regimen.  I am still losing hair, with no way of knowing if or when it will stop.  But the bimonthly trips to the derm at least allow me to feel I'm actually doing something about it, and I am satisfied with that.

Hope this helps a little.  I wish you the best in finding what works for you!

Anne

Permalink Reply by Leigh on June 2, 2017 at 9:11am

Hi Anne - thank you so much for your reply. Because the current treatment protocols for FFA involve topical and systemic drugs in addition to the shots, it's been difficult to find what the results have been for just the injections. In my case, I have a strong family history of various cancers and glaucoma, so I'm saying no to anything systemic. Of course, I understand you don't have a relative comparison, but if you feel they've slowed your hair loss, I'm going to go ahead with them. Good to hear the side effects have not worsened for you, I was a bit worried about what I'd read. Thanks again for your kindness. I hope you enjoy the summer in NC, I've heard the mountains there are beautiful. :-) Very best regards, Leigh

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